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[Tootsey11]

 Hi everyone, hoping someone can help.

I'm 44. I was prescribed vagifem in February for very minor tearing and spotting after sex. I developed CV in March. While ill with CV I started having burning on the skin in and around pubic area and vaginal area. As doctor had prescribed me two courses of antibiotics to prevent pneumonia I presumed I had thrush. I got canesten pessary and cream, but nothing worked. I also had the strangest of discharge, like long string with yellow ends. As everything was quite strong down below, I then presumed BV. Went through a course of BV active gels. First couple of days I felt great, but then symptoms returned. As I had been unwell with CV, I had not started the vagifem, but as I was having no luck, I started the 2 week loading dose. As time progresses and symptoms remained, I upped the dose from the 2 a week to 4 then 5 then 7 nights a week. Gp then added in Ovestin, which initailly helped on the outside, but now after months of use has started to leave everything red and more burning.

I was seen by a "specialist" gynae after Gp referred me urgently. My symptoms have continued to worsen as each week goes by. After going through my vaginal symptoms he decided to "try another cream". My heart sank. He said as I had no other symptoms I needed nothing else. I have a long list of other symptoms that have been going on for a number of years, including shortness of breath, nausea, headaches, brain fog, severe fatigue and a urgency to pee. My last period was April 2019. My GP dismissed all my symptoms for depression even though I'm not depressed and said there was nothing else wrong.

Two weeks ago gynae started me on conti patches and was to continue with vagifem as needed. I am still getting worse.

I haven't worn underwear since April, it hurts too much.
I'm struggling with walking.
Sitting hurts like hell.
I can't even wipe my bits after peeing.

I've had various urine tests, swab tests etc done throughout the last six months, everything negative. I've recently done a home test for BV and thrush and both were positive, but doctor won't listen due to lab test saying nothing wrong.

I can't live like this. I'm sore, burning, skin splitting, raw and in pain 24/7. I've tried everything, including. Sylk, replens, vagisil, coconut oil. The oestrogen treatment is not working. I think I have numerous things going on at the same time and no matter what I do I can't solve anything.

Can any of you ladies with more experience assist in any way?

[CLKD]

Yep.  Do read the vaginal atrophy and bladder issues threads.  Get hold of "Me and My Menopausal Vagina" from Amazon by Jane [sorry forgotten] 

As oestrogen levels drop the skin may become thin and dry.  If 'vagifem' isn't working try 'ovestin', same idea but delivered differently.  Initially for 2-3 weeks every night along with pain relief: I use 'nurofen' when I have the need to pee feelings.  2 tablets 3 times a day for 5 to ease the spincter.

Get some Vaseline or Sudacrem down there on a regular basis to help any dryness.  I use KY Jelly but that doesn't suit everyone.  Applied often between the labia and 'ovestin' internally.  It's about management and as you have been ill, your immune system will be aggravated too.  [you mean C-19?]

Have you had your full blood count done recently, including thyroid function and VitD levels?  When I had low VitD levels I did weeding for 20 mins then had to sit absolutely still for 2 hours.  Until the GP prescribed capsules which really helped.

Replens can make the situation worse due to fillers.  You may be using far too many products down there.  Bicarb of soda in a cool bath can help apparently. 

Browse round.  Make notes ;-)

[Tootsey11]

Ovestin has made things worse, left everything red and skin burning worse. I'm not dry inside, as vagifem applicators are coming out moist. I've done to baking soda baths and they nearly lifted my skin off. Never again.

[CLKD]

Have a read of the VA threads and mayB join the vaginal atrophy facebook which is a private group suffering similar symptoms. 

[CLKD]

From The Burning Club thread: which new members can't access initially .......

VA is a chronic condition due to lack of oestrogen, so if left untreated it will deteriorate anyway. Vagifem is a minute dose of E so there is no need to be scared of it. Start the Vagifem and see how you get on.

Good resources for VA sufferers are Jane Lewis's book Me and My Menopausal Vagina (Amazon), her private Vaginal Atrophy Facebook support group, and you can also find lots of information on her Instagram page @my_menopausal_vagina.


U can however ask to join Jane Lewis's VA Facebook group .........

[Tootsey11]

Would I not have seen some improvement after 6 months on Vagifem 7 nights a week and Ovestin for 4 months, and now patches?

I've been reading here for ages trying to pick up any tips from others. Could I be allergic to the vagifem?

I'm starting to think I have nerve damage from coronavirus as the whole area can be pins and needles everywhere for hours on end.  One of my worst symptoms from CV was the nerve symptoms throughout my whole body. I have long covid and still have the body fizzing going on.

[Joaniepat]

Tootsy11, have you tried cutting back on the amount of Vagifem and Ovestin you are using , to see if that makes a difference? It is always possible you are reacting to one of them. That aside  it might be a good idea to see a vulva dermatologist, which you can do either privately or NHS, but obviously private would be quicker. A GUM clinic if you have one in your area is another possibility.

CLKD has given good advice about joining Jane Lewis's private Facebook support group. The other members have a lot of experience and many have endured what you are going through.

JP x

[Tootsey11]

Thankyou for the replies, but no one has really answered my question. Is it normal to have no improvement after six months?

My GP has said I should have had a vast improvement long before now and is at a loss at what to do.

Yes others have endured this, but what joy is there in life when every movement you make is agony, you have to pee forty times a day and at 44 cannot have sex.

[CLKD]

Yes - improvements are usually within 3 months with further improvement from then. 

[robotwars]

Ive been to a private appointment for similiar to this, and ive been given s steroid cream (debroviate!!!) something like that, he said he thought i might be suffering from lichen schlorisi... and to try and see if it helps, im also on vagifem and evorel conti

[Tootsey11]

Robotwars that was mentioned to me too. I have used dermovate, I found it very cooling after its applied. But I have no skin changes, and I found after a few days applying it my skin started to thin greatly. I know to diagnose lichen sclerosus, I would need a biopsy, but I don't even think I would be offered one as there are no visible changes.

[Tootsey11]

I meant to ask do you feel any better, any improvement with using the vagifem conti?

[Joaniepat]

Robotwars that was mentioned to me too. I have used dermovate, I found it very cooling after its applied. But I have no skin changes, and I found after a few days applying it my skin started to thin greatly.

Topical steroid preparations do not thin non hair bearing skin.
JP

[Tootsey11]

I've only been on patches 2 weeks, just into my third week. Dosage, I don't know, I think conti 50. It doesn't say much on the patches box.

I only put vagifem in til I feel resistance,  the applicator goes in about two thirds of the way.

Jp, my skin especially my labia minora and clitoris hood did start to get really thin with dermovate. I stopped using it. Ovestin pumped them up again, but then I developed really bad burning to it so stopped it.

I heard and read up on Tibolone, I don't know what to do. Last night everything down below is really inflamed and red. I hadn't used anything on it all day. Clearly something is really wrong and no one can tell me what.

Should I stick with the conti or ask for Tibolone?

I really appreciate everyone taking the time with replies.

[CLKD]

No consolation but I thought about you as I dropped off to sleep